Tim Vallillee announced on Facebook May 6 that he is about to start taking the costly cystic fibrosis medication that he has been seeking for months.
In a video captured by his young son Isaiah, the 46-year-old Greenwood resident said he had been added to a Compassion Care Program of Kalydeco by Vertex. The drug is an effective treatment for patients with the G551D mutation of CF.
“Now I can cut my hair,” said a jubilant and shaggy Vallillee and “watch my son grow up.”
At $300 to $400 a pill, the twice-a-day treatment would cost upwards of $300,000 if he had not been added to the program. Vallillee had been lobbying the province to fund the pricey medication.
Vallillee was diagnosed when he was seven months old, when the life expectancy of someone with CF was around two years. He has to consume a number of medications when he eats, take an aerosol mask at least twice a day and consume daily antibiotics when feeling "down."
He says CF treatment has come a long way.
“When I was a child, I had to sleep in a tent over my bed with aerosol medicine flowing inside every night. I had to take up to 20 pills per meal, four aerosol masks per day, did postural drainage twice a day, and had frequent check-ups every six weeks to track my progress,” he said.
Vallillee loves to perform and says singing helps him keep an eye on his lungs.
“I had been singing in rock bands for a number of years and in the mid-1990s, I stopped for a time, and soon became sick. I quickly got back on the wagon knowing that my singing ability keeps my health in check.”
A number of years ago, he found vocal coach Nancy Denton-Peck and today people are astonished that he has such a powerful voice when he lives with a disease like CF, which “makes me very happy and proud.”
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. Vallillee has been fundraising for the Great Strides CF walk in Kingston on May 25. Walks are also being held that day in Yarmouth, Barrington, Halifax and Cape Breton.